There are certain days that are burned into our minds forever . Last Thursday was one of them. On a normal day I take the younger boys to school and Alex to my mom for the first half of the day. As ironic as it is, Doug happened to have a flat tire when he left for work, he ended up taking my explorer to work. This meant that I called on my mom to take the younger boys to school and then come back to get Alex and I (her small truck won't hold all of us). After stopping to get us we noticed Alex had started a series of myoclonic jerks, which is completely not unusual for mornings. He generally works through them in 10-15 minutes. We stopped and picked up Orange Juice hoping it would help to get something in his stomach with his meds perhaps to help dissolve them quickly. We were on the road for no longer then 3 minutes when the most incredibly terrifying scream pierced through my moms truck .
Let me build the picture, my mom is driving, Alex is sitting behind her in one of the extended cab seats and I'm in the passenger seat. I remember in slow motion looking over my shoulder at the source of this horrible scream and seeing his eyes in the back of head, his whole entire body thrashing , it seemed as though he had stopped breathing, froth at the mouth. He is 5'8 , weighs 160. He is banging his head back against the glass window, his arms are hitting at my mom over the seat , legs pushing her seat forward as far as possible. We are in the middle of a busy state route. I leap as far into the backseat as possible trying to hold down his limbs and protect his head, and keep him from thrashing my mom. We are in mid transit to my work , so I am screaming at my mom to hammer it so we can get him to the hospital. He has not had a grand mal seizure in 10 years. This is scary, that is such a weak word for what I was feeling. The last time we experienced a grand mal he was small , I could protect him, I could hold him.
Realizing we were better off to stop at my employment and then call a squad we took that route. When we arrived at my job , he had started vomiting , that's normal for this type of seizure. I realized he had bitten off the tip of his tongue. The guys from work rushed out to get him out of the small backseat and we layed him flat . He came back to us for a few minutes and then began with more mycolonic jerks , strong enough that he had fallen unresponsive again. The ambulance shows up and instantly gives him oxygen and starts an IV with anti convulsant drugs. They cart him to the ER where it seems like an eternity before he stirs and gives us any indication that he is waking up. He ended up with some really sore muscles from all the seizures, a few bruises from hitting himself against things and grabbing parts of his body, and of a bit of his tongue gone.
I haven't even been remotely the same since. I moved his bedroom back into Andy and Aaron's room. I sleep with one eye and two ears open. I am a mess. He tells me I overreact. Its crazy how he is ready to move past this and forget it happened and I keep reliving it every time I close my eyes. I completely and logically understand that millions of people have seizures everyday. I can't get over seeing his body completely taken over and feeling so helpless to relieve him of the pain. I am certain the adrenaline didn't leave my body for 3 days at least. I had believed we were past him having grand mal seizures, I was wrong. One of the worst feelings is knowing I can't predict them, I can't stop them , feeling completely and utterly helpless at the mercy of his electrical brain activity. Knowing that I have fought so hard to keep them at bay and feeling like I have failed him. Why after 10 years did the big one have to come back? I had grown accustomed to his small myoclonic jerks, his tonic seizures. This I was blindsided with.
I didn't mean to write a book, I needed a place to put it into perspective. I'm amazed that we can do so many medical miracles but we can't cure seizures. It makes me heartsick to think of other children going through this. All I want for him is what every parent wants for their children. I feel helpless and I hate that. Thank You for letting me vent on my blog :-/
3 comments:
I can't imagine how scary that must have been.And venting is just what a blog is for! :)
I'm sorry you have to go through all of that. You know you haven't failed him though, and I'm sure that he's really thankful to have a mother like you who cares so much, even if he does tell ya you're overreacting. I feel really sad that your family has to deal with something so serious, and being blindsided like that, wow, I would've felt the same way you've been feeling.
I can't say I understand what you're going through, but I can say I hope that the big ones don't become more frequent. Lots of hugs JoAnn! Also, like Stephanie said, venting is what your blog is for! Don't apologize!
I can only imagine how hard that was for you and reading it has brought me to tears. More than anything, we moms want to protect our children and I do know what it's like to watch them suffer through something we have no ability to take away for them. You are strong and courageous, as is your sweet boy. Never apologize for using your blog to vent. It's exactly what it's for!!
Love you guys,
Nikki
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